Myasthenia Gravis/Cytoxan

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Heidi's Life
New Member


Date Joined May 2013
Total Posts : 1
   Posted 5/9/2013 12:03 PM (GMT -6)   
Hi,
I am at 41-year-old woman who was diagnosed in 2005. I have had many occurrences with my Myasthenia crisis since then. I was on CellCept for five years at full dose, moved over to Immuron at full dose, have been doing IVIG for the last couple years. Tried Mestinon but side effects kill me. I've also had many plasmapheresis infusions. Dr. recently tried me on Sandimune but had a really bad reaction. I am now on Cytoxan 500 mg once a month for six months, and then for the next three months after that every other month till I get to the 9 month mark. Dr. told me if I continue having symptoms he will raise my dosage on the Cytoxan. While I'm doing the Cytoxan I am doing IVIG every three weeks. I don't know if anyone can answer my questions but here I go.
1. What side effects did anyone have on 500 mg monthly of Cytoxan?
2. Did you lose your hair on a low dosage?
3. Does anyone have myasthenia gravis, and if so could you tell me what things you've tried to help your disease?
4. Aside from my disease, if anyone has taken Cytoxan could you tell me what you experienced while on this medication alone?

I'm desperate to try and find anything to help my disease get into remission, as I am a mother of four boys and feel that I'm young enough that I need to live my life with them and not away from them.

Heidi

jmgfi
New Member


Date Joined May 2013
Total Posts : 1
   Posted 5/16/2013 1:43 PM (GMT -6)   
Hi Heidi, I know of one person who has had cytoxan to treat her MG. You can reach Marie through her blog www.joybenchmarks.com
Marie has both MG and diabetes, and discusses this on her blog. I checked, and she would welcome your contact.

McCullough2000
New Member


Date Joined May 2013
Total Posts : 1
   Posted 5/29/2013 8:59 PM (GMT -6)   
I am not on prescription medications for my ocular myasthenia gravis. However, I have had very good results with supplements. I started with Huperzine A, which the government is using in clinical trials for something entirely different. I am using the same dose the goverment used in the trials. After 4 months my eyes no longer appeared as small slits due to weak eye muscles. I am now adding Lecithin to see if further improvement can be made. Both Huperzine A and Lecithin increase acetylcholine but in different ways. And of course I am intent on trying to insure the MG does not proceed further. Google Huperzine A with myastenia gravis, then Lecithin with mysastenia gravis and you should get information. You may also get info by searching for myasthenia gravis on www.lef.org. My regular neurologist and also the neuro-opthalmologist both approve of my approach and have made notes on what I am doing and my apparent success. Although ocular MG sometimes disappears spontaneously, that is unlikely in my case because photographs going back 10 years show my eyes as small slits. It would be remarkable for that to just happen now. Discovery of my problem came about because I sought plastic surgery for my eye condition. Yes, MG shows on my blood tests. Because plastic eye surgery was not recommended for my eye slits, I sought other solutions for the MG causing the condition - and may have found them. 
New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, July 19, 2018 2:36 PM (GMT -6)
There are a total of 2,983,270 posts in 327,097 threads.
View Active Threads


Who's Online
This forum has 161903 registered members. Please welcome our newest member, bail1234.
475 Guest(s), 15 Registered Member(s) are currently online.  Details
Balladeer, 81GyGuy, mattamx, Dahlias, vminas01, tickbite666, GoHerd92, Libertee, fawad malik, InTheShop, quincy, bail1234, borborygmi, ljimd, iPoop